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Friday, December 9, 2011

Introduction

I never imagined while I was pregnant with my first son that life would be anything like it has turned out to be. In so many ways it is better than I ever pictured it could be, but of course it's also quite challenging.

My son Jack was born with a unique chromosomal disorder, 5q11.2-q13.2 deletion, or Winnlemans Syndrome as we call it. Winnlemans Syndrome (a made up name... because he's our "Winnle Man") results in severe cognitive impairment, small stature, slightly wide set eyes and a flattened nasal bridge, and a super adorable personality. *(UPDATE: We've found out about 4 other children world wide with similar deletions, similar facial features, developmental and motor delay, and ocular anomalies and it has been suggested by the reporting geneticist that it be called 5q12.1 Deletion Syndrome or Jaillard Syndrome, but that is so far unofficial, so Winnlemans it is!). But seperate from the issues his disorder has caused him, he also suffers from a condition called Eosinophilic Esophagitis (EoE), an allergic reaction that occurs in the esophagus and makes eating very painful unless all of the allergic foods are removed from the diet. The trouble with EoE is that the suffer can literally be allergic to anything, and since the reaction occurs only in the esophagus, skin testing and blood testing are not always accurate. The only real way to know for sure is to remove all food from the diet except an elemental formula (which tastes terrible) for 6 weeks, then to introduce foods one at a time, with endoscopies and biopsies in between new foods to test for the presence of eosinophils. Sounds tiring, doesn't it?
But before going to that drastic of a route, Jack's GI suggested we remove all of the foods he has tested positive to, and so that's what we've done. Those foods are:

Milk

Eggs

Wheat

Mammal meats

*(UPDATE: After more testing we are now avoiding these products plus soy, rice, oats, and chicken)

For a long while we made our regular foods and then made Jack's foods seperately. I think that was more because we just really couldn't think of anything he could eat except baby food at first, but now that he is older, we hate when he does his wiggle-wiggle (a gesture he uses to ask for something) while we are eating something tasty and we have to say no, and hand him a 'cookie' that looks like wet sand and tastes like broken glass. We have recently chosen to transition our whole family to this dairy, egg, wheat, and mammal meat free diet.

This blog is where I intend to document our progress and some hopefully useful recipes along the way :)